April 12, 2013

Walk for Autism and 5K Race to Solve the Puzzle, April 6, 2013

This post is extra special to me, like this walk was extra special to me. I probably won't be able to capture that in this post because I'm trying to squeeze writing it in between the million tasks of momming and having a new job that includes training for the grand opening that happened tonight. So here goes nothing, but hopefully something.

Early Saturday morning with three of my four kids hanging onto my belt loops (not literally), we dashed over to the Walk for Autism held at Veterans Park in Hoover, AL. We were geared up to walk with our buddy Jack and his family and friends.

Ezra, Diane (Jack's mom and my runner bud), and Lisa (me!)

The race course, for those who are considering the run, covers 3.1 miles of wide trails and pebble paths that wind through Veterans Park. There were a couple of hills, but nothing major overall.

My kids bailed in the middle because you pass the finish line at about mile 2, and they got distracted by the bubbles and cake walk. Plus Jim 'N Nick's came out to provide barbecue for the race participants.

At the finish, they had booth after booth of activities of the kids to enjoy, plus there's a playground about twenty feet away from the finish line. My kids were about an inch away from declaring this their new home and refusing to ever leave.

Gluten-free cupcakes for the cake walk.

Reason #634 to never leave the after-party.

Cake walk in action.

Jack (far right) and his race crew

Jack, like a lot of other kids at the walk on Saturday, has autism, and all of us who were walking with him were there to say to Jack and to the world that we love and accept Jack for who he is. He doesn't communicate the same way that a lot of people are used to, but he loves and feels deeply. And he has an amazing family and community of friends who is loving him right back.

This walk is held in April because it's Autism Awareness Month, which means that organizations like Autism Speaks and Autism Society are working overtime to spread the word about the rise of autism in our country and the importance of increasing research funding to match the startling rise of demand. But for the parent of an autistic child or a person on the autism spectrum, autism never sleeps. Autism is alive every month, every day, every hour.

When I talked to my friend Diane about writing this post, she referred me to an article that captured some of her feelings on autism awareness. The full article is here. Dan Olawski writes:

Since autism spans a spectrum of symptoms and behaviors, not everyone experiences it the same way. Some children with autism seem to be typical, while others are quite obviously struggling. The same goes for the families and friends of these children who see their lives completely impacted by the world of autism.

With that in mind, creating a detailed and complete awareness of autism would most likely be quite challenging. And, honestly, some might not be strong enough or, sadly, interested enough to know the deep truths:

How many people would be able to watch a child cry and be devastated by the failed attempts to communicate or complete a simple task repeatedly hindered by OCD or echolalia? How many could watch parents deal with the guilt of thinking they caused their child’s autism or the struggle caused by the questions of what to try next for their child when all else has failed? How many could truly understand just how much time and money it costs to even make an attempt to help your child with therapies, diets, and other unproven programs?

First, I need to google echolalia. Anyone else know what that is?

Then he continues with the part that is pretty much guaranteed to make you cry:

I think what I truly want from an Autism Awareness Month extends beyond facts about how many cases are diagnosed and where people can donate to help. I want people to know that our children with autism are really amazing kids who go through amazing struggles every day. I want them to know that autism parents don’t want you to pity them or their children, but to understand just how deeply love and respect are important to the autism community.

I could see that love at the walk on Saturday. Love of parents, families, friends, caretakers, and community members. While many of us, myself included, will never truly understand the daily struggle with autism, we can all go out of our way to let our families and friends who are touched by autism know that we love them, that we want to be a part of their lives, that we want them to be a part of our lives, that we want to understand more (don't be afraid to ask questions!), and that we honor their strengths and their weaknesses.

My friend Diane is basically the most awesome mom I know. Her dedication to her family is a wonder that I am constantly beholding and thinking, dang, I've got to get my act together. My kids eat better since I've known her because just hearing about her complex daily menu (hot breakfasts daily and lamb for lunch, anyone?) has inspired me to upgrade my kids' cereal for dinner to actual cooked meals.

But what inspires me the most is her consistent dedication to Jack. One thing that she doesn't like for people to say to her when she tells them that Jack is autistic is "I'm sorry." She's not sorry that she has a healthy 20-year-old son who loves her unconditionally. She's not sorry that she's spent years traveling all over the country to help him get the best treatment for autism and that she's still searching for new treatments all the time. And she's definitely not sorry that she's Jack's mom and #1 advocate, so you shouldn't be sorry either. She knows Jack's weaknesses, but she also sees the vivid picture of his strengths.

I'm not the only one who recognizes how special their family is. Just this week, al.com (our Birmingham news source) published an article about them. Go here to read the full article.

For those of you who may not be familiar with autism and communicating with people with autism, I googled some resources for you. Read here, here (although I disagree with #13 because I feel like the only way to understand is to ask questions), and here.

Like most of these articles state, autism covers a very wide range, so it's difficult to write one article that would cover every autistic person's behaviors, making it even more important to reach out to the people you know with autism and to get to know them and their families.

I'm going to guess that echolalia is a sensitivity to sounds, as many of the clients I have worked with who have autism are very sensitive to noises.

This post was amazing. I work with special populations and it's what I want to do with the rest of my life, and the sentences from the quote you included that really resonated with me are: "I want people to know that our children with autism are really amazing kids who go through amazing struggles every day. I want them to know that autism parents don’t want you to pity them or their children, but to understand just how deeply love and respect are important to the autism community." This is so true. Many people who do not understand autism, Downs Syndrome, CP, or anything that's "different" think that there's something wrong with having a special need. I also hate when people describe someone as "autistic." Someone who has autism is not defined by autism. They are a human being and autism happens to be one of their unique characteristics and they should not be labeled by it!

Before I go off on a soap box, I just wanted to thank you for this post! It was so beautiful.

It was so nice meeting you Saturday. This blog is awesome, and I truely apppreciate you spreading the word about Autism, about Jack, and especially about his mom. I have never met a more dedicated mother in my life. She will go to the moon and back for Jack. At times it is difficult, but she has NEVEER given up on him. She loves him, is super proud of him, and has a level of patience that surpasses all others. She is a true example of what a mom should be!

By the way, echolalia is when a person has the habit of repeating or echoing what they hear. I have worked with several children with echolalia. Some would repeat what I said verbatim, while others may have just repeated the last word or words. They would even repeat some things that they heard on television or in a passing conversation. When I was working as a Speech Therapist, my goal was to decrease their echolalic habits, and facilitate appropriate conversation.

This post brought back so many memories for me watching my Dad interact with a little boy at our church who has autism. He entered my parent's two year old Sunday school class and almost immediately bonded with my sweet Daddy. Many a Sunday I would poke my head in to find my Dad just sitting on the floor with the little boy and playing with a toy while the little boy watched him. For years he stayed in their Sunday school class and spent every Sunday with my Daddy in their own little world. It was truly one of the most heartwarming experiences for our family and one that I reflect on every time I hear about autism.

a really good friend of mine is actually a teacher at Mitchells place. Awesome that you could go support. It's very alarming how many people have been diagnosed over the past few years-I hope we can continue to learn more and educate.